Day +414: Ready to Party!

It's day +414 for our little Max-man and there is HUGE excitement around the Meyer homestead! We have been busily preparing for the big party on Saturday and the Ollie's bash on Sunday morning. Max is so excited! He's already having a bit of trouble sleeping! When I went to tuck him in at 11 pm last night, he sat up and smiled and said, "I can't wait for this weekend!" We are ready to party...ready to celebrate! It looks like we are going to have a fabulous crowd of about 200 people! We're so happy that we can thank all of you for all your loving support and celebrate life with you!

I haven't updated since the blood/marrow drive a few weeks back. It ended up to be a success. We were able to provide 30 donations to Hoxworth, mostly from people that had either never donated before or who had not done so in a long time. Those were exactly the type of people that I hoped to attract to our drive. I also hope that they will now continue to donate so that their gift of life will continue. Thanks to everyone who donated and helped with the drive - especially Aunt Monica who organized everything once again!

Max has continued to do well since I last updated. We were down at the hospital last Thursday and Friday for some testing and his regular monthly check-up and medications. The testing on Thursday included a talk with the Endocrine team, an audiology exam and an echo cardiogram. The Endocrine team was pleased with his current growth and we agreed to just keep an eye on things over the next year or so. At this point, Max remains right along the same growth curves for height and weight that he was on prior to the transplant, which is great news. He is projected to be small, of course but, we were all very pleased to see that he has not lost any ground as a result of the transplant. His audiology exam showed some minor hearing loss in his left ear but, the doctors were pretty convinced that it may be from wax and fluid in his ears. So, we are treating that and hoping to get it cleared up so that he can be retested. We all feel confident that it is the cause of the hearing problem. We have not yet heard about his echo cardiogram but, with the way he runs around these days, I don't anticipate any issues there! We will finish up the annual testing this Friday with a pulmonary function test, some xrays to see where his bone density and bone age stand and an eye exam.

Last Friday was Max's normal monthly check-up and infusion of medications. His counts all look good and his engraftment from last month was fantastic - back up to 97.4%!! It was a bit of a rough appointment again as Max really struggled with the IV and his stomach. Although we are down to primarily once a month visits at this point, they remain difficult for Maxer. I think just being back in that hospital makes his stomach upset and fills him with anxiety. We are all aware of it and working to make him more comfortable again, as much as we can. It's just not what an 8 year old wants to be doing...even one day a month!!

Max's immune system has so far passed another test this week. Alex, Ellee and I came down with a pretty nasty cold last week and I was hopeful that Max was not going to catch it, thanks to the monthly IVIG medication. However, Sunday he began coughing and being congested and he has struggled with it this week. He seems to feel fine and has not run any fevers but, I am going to call down there today and have his cough checked out while we are there on Friday, just to be sure he isn't getting any infection in there. Now that we are getting more and more back to reality, "kid sick", as Dr. Davies calls it, will be part of the course. We just have to watch to be sure he doesn't develop any fevers that could be a sign that his system is struggling and he needs some intervention from the docs at Children's.

Because of this cold, Max hasn't been back up to school this week, unfortunately. I didn't want to risk him picking something else up while his system is already working to fight off this cold. We are planning to join his class on a field trip next week and get him up to school another time, hopefully. Several of his classmates will also be at the parties this weekend so, we are definitely getting him reintroduced. He is loving seeing everyone again and getting back to his old favorite things to do.

Since the transplant, we have teased Max that Ellee's marrow is going to make him start liking Hannah Montana or something girly like that. He always immediately denies it and laughs. So, we got a kick out of it the other day when he decided to put Ellee's sweater on (in the picture above). What a ham!

Matt and I got away a bit last weekend as we took a trip up to Cleveland last Saturday for my cousin's wedding. We enjoyed seeing all of my extended family up there and having some time to really talk to each other! It was hard to leave the kids, even though they were in great hands with Gaga (Matt's mom) but, we know we need to begin to take these steps again.

Several people have asked me lately for an update on Spud. He is doing great! He's HUGE! Much bigger than we expected. The rescue organization that we got him from had his mom too and thought that, since she was a small Australian Shepherd, he would be small too...no more than 40 pounds. Well, they were wrong! Today, he is about 60 pounds and continuing to grow a bit. Luckily though, he is a sweetheart. The kids LOVE him and he LOVES them. Max is almost always our earliest riser so, every morning, Spud cuddles right up to him. They spend a half hour or so just sitting with each other, loving on each other. There is quite a bond there, to say the least. Spud is also excellent with Alex and Ellee. Alex loves to sit and pet him and talk to him and, of course, Spud eats that up! Ellee likes to sit ON him and pet him and, being the kid-friendly dog that he is, that doesn't bug Spud a bit. He is definitely fully engrained in the fam and much loved. He still has PLENTY of work to do on the obedience front but, I'll get to that one day! :)

Things around here remain positive and happy! We are ready to celebrate this journey that we have all been on with Max and to show him what an amazing kid he is. We know this weekend will be full of smiles, laughter, joy and love and that it will again create happy memories for Max and our entire family. We are really looking forward to seeing you all at the park and Ollie's!

One more thing...if you have a Max shirt from the walk in October, wear it! We thought it would be fun for him to see all the people walking around in them at the park!

See you soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +401: Milestones

It's day +401 for Max...just passed the day +400 milestone! He continues to do wonderfully. We have had a busy week, full of milestones so, I wanted to share them with all of you loyal and loving supporters.

Monday evening, Max, Alex, my brother Patrick and I got to attend the Reds game with Matt's company's tickets. We had a fabulous time! The seats were in the front row of the second level so they had a perfect view of the field and it was an absolutely beautiful evening. We also got free food and soft drinks with the tickets so, we all enjoyed some good ballpark munchies. Overall, it was awesome. Just so much fun to be able to go to a ball game and enjoy a perfect spring evening together. Thanks DJJ! Definitely a milestone passed to be able to go to a game, just because we can, without major worries.

I wanted to share the Reds game with you all because it was so enjoyable but, I am really writing today to tell you about a major milestone that we passed this week. On Wednesday morning, Max returned to school for a few hours! I took him and stayed with him the whole time as he asked me to and the teacher and counselor up at school agreed that it was a good idea the first few times. He LOVED being back! I don't think the smile ever left his face. He got quite the celebrity treatment from the class and really the entire school. He was surrounded on the playground and reconnected with a lot of kids that he knew from Kindergarten and 1st grade but, hasn't seen in over 18 months! Overall, he really, really enjoyed being back. We are going to keep his visits going for several mornings this month for about 2 1/2 hours each. He is already planning on going back on Monday, per his request, and Wednesday next week. I'm planning to stay with him again on Monday and then hopefully lessen the amount of time I am there each time after that until he can do it without me at all this month. I think we ALL feel better that I am there initially. I could tell that his teacher was a bit nervous and the other teachers and counselor as well. I think we all need some re-adjustment time!

As we talked about school on Tuesday evening, I told Max that he should pick out the clothes he wanted to wear for his big first day back that night. He agreed and then said, "I wish I had a shirt that said MILESTONE on it." So cute. At 8, he realizes how important and significant these times are in his life as much as the rest of us do.

Having Max return to school, even just for a few hours a week, is an enormous milestone, as you all understand. I was more emotional on Tuesday evening than I have been in awhile. To be honest, I was filled with mixed emotion. I am so thrilled that he is well enough to return to school and be with his friends again and yet, I am scared. His health remains fragile and although it is a good time of year to return to school and he does have a functioning immune system, if the wrong germ came his way, it could still be difficult for him. Even more than that, however, I realized on Tuesday evening what a huge adjustment this is going to be for me again. I have been lucky to have him with me, essentially 24 x 7 since this journey began and letting him out of my sight for long periods of time is going to be frightening. To top things off, thinking of our friends, the Akins and their tremendous loss again this week has made me never want to let go of my little ones! The time that I have had with all three of them here at home this past 18 months, as tough as it has been at times, has been precious. I already know, as I've said before, that I will treasure it forever. I know I have to let go a bit again and I am ready to do that. I just realized on Tuesday that it's going to be a bit harder than I thought!

Part of my increased nervousness this week is also due to some annual testing that is coming up for Max next week and the week after. Each year now, post-transplant, Max will have a series of tests run on several of his major body systems to see where things stand - his heart, lungs, bones, eyes and endocrine system. We have long days at the hospital planned for next Thursday and Friday and the following Friday to get all of the required tests completed, along with his regular monthly check-up with Dr. Davies and medication infusions. He is doing wonderfully and, as a result, I feel confident that all of the results will be good. With that said, it still makes us nervous. I don't know if there will ever be a test or doctor's appointment in Max's future where we will not be nervous, unfortunately. It just goes with the territory now. I'm not sure when we will have the results from all of this testing but, promise to keep you all posted as we know. All thoughts and prayers for good results are appreciated, as always.

The blood/marrow drive this weekend is shaping up to be a great success. Thanks to all of you that have volunteered to donate blood. We can also accomodate walk-ins so, if you have not made an appointment but would like to donate blood tomorrow, please come on up! I am sure that we will infuse Hoxworth with lots of healthy red cells to help untold numbers of needy patients. We hope to get several new people on the National Bone Marrow Donor registry too. What a wonderful day it will be when someone we know gets called to be a donor! My mom and I have a delicious Mother's Day lunch planned from Max's Meals for the inpatient families of A5 on Sunday too. We are looking forward to bringing a little comfort to the Hem/Oc and BMT mom's stuck at the hospital this Mother's Day.

Thanks for your continued support, love and prayers for all of us and our extended BMT family. More soon...

Peace and love,

Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +397: Blood/Marrow Drive Update

It's day +397 for Max and he continues to do well. He is currently enjoying some fun play time with his cousin, Ben while Alex is at school and Ellee is napping.

I am writing today to be sure that everyone is aware of the blood and bone marrow drive that we are holding this Saturday, May 8th at our church, Lutheran Church of the Resurrection from 9 am - 3 pm. We are holding the drive in honor of Max's one year post-transplant anniversary and Hoxworth has titled it "Max Meyer's Big Give Blood Drive", as you can see on the flyer at the following link: https://acrobat.com/#d=vRiUP8cx1aQMSfGUw8DxsQ. It is one of the ways that we are hoping to give back somewhat for the miracle that we have witnessed in Max's life.

So far we only have a few people signed up to donate blood and Monica and I are concerned and feeling disappointed. Last year she had more turn out than Hoxworth could handle so, we planned for lots of slots this year and so far the response has been minimal. We would just ask that you consider giving the gift of life to a stranger through a blood donation. Max received 25 blood and platelet transfusions last year through his battle with Aplastic Anemia and he would not have survived without them. The picture above is from one day last year when he was getting a blood and platelet transfusion (you can see it coming down the lines to the left of him into his IV which is covered by his blankets). Everyday, Hoxworth needs 350 whole blood donors and 40 platelet donors to meet the needs of patients here in the greater Cincinnati area. Sixty percent of the adult population in the US is eligible to donate but only 5 percent do!

If you are interested in donating on Saturday, please contact Monica McGrew at mmmcgrew@yahoo.com or 513-231-6768. Additionally, if you are not signed up for the National Bone Marrow Donor Registry yet and would like to sign up on Saturday, you can stop by the church anytime during the drive to pick up a kit and get registered. It just involves a simple swab of your cheek (ie no needles required to get on the registry).

We know first hand how important and life-saving your donation of blood and/or bone marrow can be. Max would not be here today without the kindness of many, many anonymous blood donors.

Hope to see you on Saturday!

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Day +396: Return to Reality

It's day +396 for Max and he continues to do very well. We are all enjoying our return to reality here at home in Cincinnati. The kids have loved having their "stuff" back and their friends around. At their ages, they really miss those things when they are away. Ellee immediately got out all her babies and purses, etc. upon our return home on Thursday and has played with them and her books non-stop. Alex and Max have spent as much time as possible jumping on the new trampoline, although we've had a lot of rain the past few days. They have also enjoyed playing with their neighborhood buddies and their cousins. Overall, we are all feeling a sense of new-found freedom again from the trip and happy to be returning to the real world more and more each day.

Unfortunately, with our return to reality, we received some harsh news about the reality of the BMT world we have been living in, once again. A family that we have told you about before, the Akin family, that we grew to know and love through our BMT journey, lost their second son, Matthew, to complications of his bone marrow transplant yesterday. Their other son, Andrew, passed away from complications of his third bone marrow transplant in the fall. To say the least, this family has been through hell. We are heartbroken for them and having a very hard time understanding how this can happen. Their parents, Kristin and Justin, are remarkably strong and intelligent people and have helped untold BMT families to understand what they are going through and find ways to deal with it, etc. Matt and I think about them constantly. We cry for them, as do our extended families. It is just not something that anyone should have to endure. Both of their boys had HLH, a rare blood disesase. To learn more about HLH, you can visit www.histio.org.

One thing I have learned throughout this process is that cancer is a terrible, terrible disease and nearly every family in the world has been touched by it. As a result, it receives a lot of attention and funding and therefore, a lot of wonderful research is happening which is leading to life saving discoveries and treatments every day. Unfortunately, through this process, we have also learned that there are other horrible diseases...things like HLH, SCIDS, Aplastic Anemia, etc...diseases that are rare and thus, not well known or understood. The more we can promote awareness of these afflictions and help people to understand how awful they can be, the more support we can garner for research and life saving treatments.

We just ask today that you think of the Akin family and keep all of them in your prayers. We know that Kristin and Justin will be carried through by their faith and the thoughts of their boys reunited in heaven. Their horrific situation is a reminder of our immense blessings. We are certainly hugging all three of our little ones even tighter today.

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)